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Marimarston

Advanced Members
  • Content count

    6
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About Marimarston

  • Rank
    New Community Member
  • Birthday 10/31/1973

Contact Methods

  • Website URL
    http://
  • Yahoo
    marimarston@yahoo.com

Profile Information

  • Interests
    Boxing, Football (that's soccer to you Americans), reading, cooking (now having to be a lot more creative!), writing (poetry, lyrics, fiction and factual), horse riding
  • Location
    London
  1. Hi, thank you for your thoughts. I know I have issues with casein so avoid dairy. Used soy milk as a substitute but found that it was seriously interfering with my hormone levels, so have also been soy free for a year or so. I am scrupulous in my diet - and even make up, skin care etc! I found codex wheat starch still caused symptoms so stopped consuming it very early on. I make most things myself from scratch and my partner consumes no gluten except bread which I do not handle, we have separate utensils (board, knife etc) for, it is stored away from all other food products and he uses butter which I don't eat, so I think I am pretty on the ball. This is the reason I am asking advice here - I check and recheck my diet, I know I am hyper sensitive to gluten and very rarely eat out due to this. I am running out of ideas and my current doctor doesn't't seem to have much interest. In fact a while ack I was persuaded not to go for my yearly check ups with a specialist as the surgery was trying to cut costs (I live in the uk - viva the NHS!) there doesn't seem to be any recognition in the doctors I have dealt with that some cases of coeliacs may not be resolved by diet alone. I am hoping to get some advice so that I know how likely this is or if there are other possibilities. I really don't want to go through the barrage of invasive, painful and distressing tests I had before unless absolutely necessary!
  2. I was severely ill with coeliacs before diagnosis - night sweats severe weight loss, vomiting all night 4-5 nights per week, extremely severe diarrhoea, villous erosion and leaky intestines were found on testing. Following a gluten-free diet strictly reduced the symptoms dramatically, and due to the level of villous erosion it was understandable that some minor intestinal symptoms continued. But it has been a few years now, and I still suffer regularly with diarrhoea, reflux, bloating, nausea, stomach pains, tiredness. Admittedly nowhere near the levels I had before adopting the diet. A year or so ago I was found to be mildly persistently anaemic and put on iron supplements. Recent blood tests showed that I have severe calcium deficiency despite my healthy diet and I am now on supplements. My doctor has not indicated that these could be related to coeliacs but these are known symptoms. I recently read on this site that one form of the disease is non-responsive to a gluten-free diet. I am VERY careful following my diet, but I was wondering if anyone knew whether the so-called non responsive coeliacs does improve slightly with a gluten-free diet, and therefore whether this may be what I have?
  3. Happy birthday and may God bless you today!

  4. Hi, Just to report that Virgin managed a very satisfactory gluten free main meal on their transatlantic flight, but the snack served later was a rather poor lettuce "sandwich" made with a gluten free roll. I must say I am tired of the assumption that just because I cannot have gluten, I must not be able to have dairy or eggs or meat. I am glad I took snacks with me - I think for any coeliac traveller it is still important to carry your own supplies!
  5. Hi Patti I am staying at 17th and Walnut in Philadelphia, I guess fairly central. I have been recommended to a gluten free bakery in south Phila, but any further advice would be gratefully accepted! Thank you so much! Hi Kathy thank you very much for the restaurant recommendations - one of my great joys in lfe has been eating out in NYC!
  6. Hi, I fly with Vigin Atlantic regularly, and have used American and Continental. I have only recently been diagnosed with celiac disease, but I have contacted Virgin because I am flying this Friday and they have assured me they can accomodate me. However (and there had to be one...) my partner is allergic to cheese, and despite various requests, we have had indiferent results, varying from completely failing to supply a special meal (cheese is quite an airline food staple) - this is the commonest mistake, to (Continental)providing a meal comprising no dairy except the cheese on the salad! Out of six flights, only one (virgin) actually managed to have the request ready, and only two have been able to offer suitable substitute meals (one made up a complete tray by taking elements from various meals and the other ended up having to fetch a meal from first class) - again, this was Virgin. However, it took four flights before Virgin even got the communication right, the two times they produced alternatives were because they hadn't been informed of my partners needs, but I asked them as soon as wee boarded the plane, and they were able to plan something and/or contact the caterers. The third time the check in girl passed the information on to the flight crew correctly, but again, she hadn't been informed by the travel agent, despite our request. The fourth time they had it completely right. So now I am confident my husband will have no problems, but I can;t guarantee I won't! I promise to let you know what happens by Sunday. Meanwhile, my tules for successful gluten free flying are: 1-You cannot rely on the travel agent to inform the airline, you must call them yourself once you have booked the ticket. 2-You must tell the airline once more when you check in at the airport, and finally, 3-When you first board the plane, take one of the airhostesses aside immediately and ask her to check if your request has been fulfilled. She still has the ability to obtain specialised meals or ensure there are some dining options available to you at this point. Leaving it til dinner time to worry will either result in starvation or a limp plate of vegetables from first class, a hunk of cheese, diced melon and a small olive. Happy flying!
  7. Hi, I regularly visit NYC and Philadelphia for business reasons, but this is my first time as a sufferer of celiac disease (well, actually not the first as a sufferer, but the first since my diagnosis) I know a few good restaurants that would probably work to accomodate me, but any recommendations on shops that sell gluten free foods as well as restaurants that you know are accomodating would be deeply appreciated. I am also happy to offer advice on gluten free survival in the UK for anyone who might be visiting!